Halo with a Twist

I've been meaning to write about a very special gift I got from Hector awhile back, shortly after receiving Joaquin's diagnosis. I wear it around my neck and I love it. It's my "Halo with a Twist" and it has Joaquin's name and birthdate engraved on it. I love it and I get compliments on it all the time. It's a pretty sterling silver oval "Halo" that is twisted on one side. It symbolizes the beauty and uniqueness of imperfection. It has become the first international symbol for Down syndrome. The founder of the website Band of Angels, Cynthia Kidder, describes it best. "It’s shimmering and reflective of light; a little different, sturdy yet beautiful. The light is reflected and radiated from it. The twist is the reminder of imperfections in each of us."

Thank you again Hector for my beautiful necklace. I love it and I love you.

Gearing Up...

We are gearing up to start the Institutes program this Monday and it's going to be a lot of work.

We will be patterning Joaquin 6 times per day in a truncal pattern for up to a minute each time. He will be on an incline crawling track starting 10 times per day and building up to 30 times per day for a distance of 1 meter each time and the majority of his free time will be spent on the floor in different stimulating environments. We have put a checkerboard wall up on one wall in his room. We will be stimulating his light reflex 20 times per day and having him locate light in a darkened room 5 times per day. We will have him look at black and white images 3 times per day and read stories to him with books that have large colorful images. We will stimulate his startle reflex 15 times per day with loud unexpected sounds as well as introduce him to different interesting and household sounds 15 times per day. We will stimulate his sense of touch 20 times per day with hot, cold, warm, cool, soft, rough stimuli on his arms, legs, hands, feet, etc (stimulating both his vital sensation as well as his gnostic sensation). We will also get him to grasp a pole 10 times per day and work up to having him hang on it using two hands and throughout the day we will work on different balance activities around the house (spinning, rocking, swaying, etc). We will also start using a choice board (basic yes/no board) and some basic sign language (milk, eat, more signs) with him 10 times per day.

Whew.......I think I can fit it all in. We WILL fit it all in!

Unanswered Questions

It's still difficult to see adults with Down syndrome. Lately, I've run into some groups of disabled adults at the park and at the mall and there is always at least one or two adults with DS. It's very surreal for me as I look at them and then look at my baby. I don't think I've noticed as many Down syndrome adults in the past five years as much as I do now. Lately the groups of people I have seen are severely impaired and have the very typical behaviors that are often associated with severe disabilities. Their group leaders escort the adults through the mall, holding their hands or escort them to the park picnic tables where they all sit quietly with little or no interaction. This is so terribly difficult to see. I can't help but wonder.... what kind of childhood did they have? Are these the babies that were sent away to an institution? Are these the babies that were more severe and the parents weren't able to take care of them? Where do they live now? Are their families at all involved? Did they have services early on to help them achieve their potential or were they just left alone to fend for themselves? I have so many unanswered questions.

What is so strange is that I have always been around disabled people and I'm typically very comfortable around this population. My major in college was Recreation Therapy and some of my first jobs were working with disabled children and adults. For over 8 years I worked with all different types of patients in every setting imaginable from disabled day camps to stroke and head injury clinics and children's hospitals to state hospitals with criminally insane men. I wouldn't say it was my calling but I've always had a place in my heart for the disadvantaged. I think somewhere deep down inside I always thought I might have a child with a disability. My mom and I have always sought out babies who have Down syndrome at church or at big public gatherings. I remember when pregnant with Joaquin, seeing an adorable infant with DS at a San Francisco Giant's game and my mom and I were mesmerized by him, pointing him out to Hector. I have always been curious about these children and loved their beautiful smiles and pretty eyes. I can even recall thinking and even saying to Hector, early on in our relationship before we were married, that we were the type of couple that would be given a child with Down syndrome....with my background and his experience with his nephew. He doesn't remember this conversation but I do. It's still surreal to me that this is now my reality. Even my mom who is a neonatal nurse has always said that her favorite babies in the nursery are the "Down's babies" and now she has her own.

But it's the adults in group settings that I still am challenged by and I'm a bit ashamed of it to be honest. I know I shouldn't pity them but I do. I guess what makes these recent experiences so uncomfortable for me is that I never want Joaquin to be "shuffled" around. With my background in Recreation Therapy, I know that there is a reason these adults are escorted around and taken to malls and parks. It's called life enrichment and normalization, but now as a mother with a child with DS, I see it as just the opposite. I know these adults probably weren't offered early intervention services or quality interactions as babies and young children. The life these adults lead is still valuable, of course, but all I see is the loss of potential and what could have been. I know that the future for Joaquin can and will be very full, active and enriched and hopefully this is the case for most every child born today with Down syndrome, as it should be. In the near future, I hope to see more adults with DS walking independently in the mall or with friends and family shopping where they want to go. I want to see adults with DS taking their own young nieces and nephews to the park to play and to push them on the swings. That is normal and that is life enrichment. That is my hope for Joaquin.



Patterning...



Joaquin in his new crawling track



Wah Keen!

The Special Mother

This story was written by Erma Bombeck on May 11, 1980 and Glenn Doman recited it for us at the last hour of the last day of lectures in Philadelphia. It was very touching and of course I was crying by the end of it, as was every other mother in the room with me, all of us feeling a sense of camaraderie.

THE SPECIAL MOTHER
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, he instructs His angels to make notes in a giant ledger.

"Armstrong, Beth: son. Patron saint, Matthew. Forest, Marjorie: daughter; patron saint Cecilia.

"Rutledge, Carrie: twins. Patron saint....give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be witness to a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see- ignorance, cruelty, prejudice- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

Never Leave the Wounded Behind

A post from Hector...
Some of the lectures we heard at the Institutes were given by the staff, but mostly by Janet Doman, the Director of the Institutes and Douglas Doman, the Vice Director. But some of them are still given by Glenn Doman, the founder. He sits in a chair at the front of the auditorium and uses cue cards that he reads. Every day, we were asked to arrive at least 15 minutes early in the morning so we could find our assigned seats because they shuffle everyone around. The last day Jen and I were lucky to be seated in the front row a few feet from where Glenn Doman was sitting.

That day we were really tired. We had heard more than 40+ hours of intense lectures in less than 5 days and the amount of information was overwhelming, so even though at times I wanted desperately to shut my eyes and rest my mind, having Glenn Doman at arms length and looking at you when he speaks, there was no choice but to listen.

One of the required readings for the course is the book, "What to do about your brain injured child..." which I read the week before our trip, I found the book fascinating, and most of Glenn's lectures are in the book, but to hear them from the man himself was a treat. Towards the end of the book he talks about family and how throughout history the family has survived and the reason it survives is so that we can divide our time unevenly. He goes on to talk about his three families: the Doman family, the Staff at the Institutes, and the Infantry Rifle Company in World War II. This is a excerpt from his book:

"My third family was my infantry rifle company. That was a true family. In infantry rifle company, the only people in front of you are the bad guys. They are shooting at you and trying to kill you. You are shooting at them and trying to kill them too. Under these circumstances you make very dear friends very - very, very quickly. More things happen to you in five minutes than might happen normally in a lifetime. Sometimes you stop shooting long enough to crawl out in the field where a lot of shooting is going on in order to grab a wounded soldier by the leg and pull him in. That's dividing your time unevenly. Everybody's in favor of that and it does amazing things to you. One of the most important principles I learned there was a law of the infantry. The law is you never leave the wounded behind. Most casualties take place in the infantry so it is vital that you never leave the wounded behind. As an officer-in-training you think that you understand it. Then you're in combat and the kid next to you gets a bullet through his chest. And down he goes. It doesn't occur to you for one second to leave him behind. Not because it's a principle you have been taught but because he is you. If the wind had been four miles an hour more from the east, you'd be lying on the ground with a bullet through your chest. All things being equal you might as well be the one lying on the ground three minutes from now. You never leave the wounded behind because that wounded soldier beside you is you. That is why you never, never, never leave the wounded behind."

As I was listening to him say these words, I was picturing baby Joaquin so full of love and smiles and how much he needs us to divide our time unevenly, how he needs us to roll up our sleeves every day and do battle to help him reach his full potential. Because the alternative is not an option. We will never, never, never leave our beautiful baby boy behind.

At Home with Down Syndrome

This article is an absolute must read.

At Home With Down Syndrome

If you get a few moments to take a look and read it, please do.

Back from Philly

We're back from Philadelphia and still recuperating from the 10 day trip.

First of all a HUGE thank you to my mom and dad for their support. My mom came with us to Philly for the first 7 days to watch Mateo and Joaquin while we took the course. This was no easy feat but somehow she managed to do it with grace and even get Mateo's haircut, get him potty trained (at least #1, still working on #2) and take care of Joaquin who was unfamiliar with the bottle but managed just perfectly with my mom in charge. She did this all despite the small living quarters (her bed was in a walk in closet turned bedroom!) and the blistering heat and humidity of Pennsylvania in the summertime. Thank you so much Mom! My dad took care of Diego for the week which included nursing a bee sting he got the first day we were gone- poor little boy! Thank you Papa for your loving care that week. Finally, a GIANT thank you to my friends Gina and Michelle for watching Diego during the week while my dad was at work. Diego had an absolute blast and barely missed us due to all the fun he was having with his friends. You all mean the world to us and I thank you from the bottom of my heart. Knowing all our boys were in good hands gave Hector and I the opportunity to really focus on the course at the Institutes.

So we completed the course "What To Do About Your Brain Injured Child" the first week at the Institutes. The Institutes for the Achievement of Human Potential is located in Chestnut Hill which is a suburb of Philadelphia. It is a gorgeous little town with cobblestone streets and lots of charm. The Institutes is located on a very large piece of property (something like 6 acres) and it is beautiful and green and lush. It was about a mile away from our rented apartment so Hector and I had a lovely walk everyday to and from the course.

The course was everything we hoped it would be and more. When Glenn Doman walked into the auditorium for his first presentation, I was brought to tears. He has to be close to 90 years old and knowing all that he has accomplished in his lifetime and after reading all his books, I was just in awe of him. He is a darling of a man, looks a bit like a "healthy and fit" Santa Claus and I was moved by all his presentations. He is one unsung hero. A wise sage.

We learned so much about the brain- how it can grow by use, how it is stimulated through our five senses, how the functions of the brain can be improved and how it's growth and development is an ever-changing process. We learned that treating the symptoms of brain injury does not work. Brain injury is in the brain so it must be stimulated through the visual, auditory and sensory pathways. We also learned that 99.9% of us have some degree of brain injury so all of us have something to gain in understanding how the brain functions.

Obviously it would be impossible to share everything we learned, there is a book named after the course and I would highly recommend it for anyone interested in brain development or for parents with children who have any developmental delays or concerns. Also, the book "How Smart is Your Baby" is wonderful for expectant parents and parents with tiny babies who want to enrich their babies learning environment. There is also a quick read called "Pathway to Wellness" that summarizes the program and gives a nice overview of the content of the course.

In a nut shell, we learned the vital importance of movement in developing the brain, how important the stages of crawling and creeping are, how to create an ideal environment in the home, how intelligence is not related to brain injury, how brain injury only affects the child's ability to express intelligence, how to increase communication, and the importance of nutrition and how what we eat, drink and breathe significantly affects brain function, growth and development. We also had the pleasure of meeting so many wonderful families all on their own journey with their amazing children.




Jen, Hector, Glenn Doman, Katie Doman (Glenn's wife) Janet Doman (Glenn's daughter and current Director) and Susan Aisen (Director of the Intelligence Programs)

The following week Joaquin was evaluated and assessed by the staff at the Institutes. We determined his neurological age and compared it to his chronological age to come up with his diagnosis. He has a severe, diffuse, bilateral mid brain injury. Based on this information, an intensive treatment plan was created to meet his specific needs. We have a plan for the next 6 months and will return to the Institutes in December for re-evaluation and a new plan based on how he thrives on the current plan. We have physical goals, intellectual goals and physiological goals. As I mentioned in my previous post, the first month is focused on changing our diet, starting vitamin supplements, and getting organized and prepared for the rest of the program which will begin the first week of August. Right now, Hector is busy building a crawling track for the baby which includes an inclined floor. I'm busy going through our kitchen cupboards, making dietary changes and preparing the supplies for the sensory stimulation aspects of the intellectual program. We have also started some simple patterning with Joaquin which we are to do several times a day building up to a minute per session.

We will blog our way through the program so we can share all the different exercises that we will be doing with Joaquin. The key to the program is frequency, intensity and duration so our days will be filled with the many different activities of the program and it is designed in such a way that Diego and Mateo can get involved and help out. The biggest key to the program is to do everything with a sense of joy.



Joaquin waiting for his next appointment

Goodbye Dairy

I officially have to say goodbye to dairy, my one true love.

Anyone who knows me, knows that my diet consists mainly of dairy and dairy products. I LOVE milk, cheese, yogurt, ice cream, cream cheese, lattes, chocolate, whip cream, and did I mention cheese? We found out in Philly that I no longer can have dairy (as long as I'm breastfeeding) and that Joaquin should never be introduced to it as he begins solids in the next few months

This is going to be hard....really hard. All I know is that perhaps those last few pounds of baby weight might actually disappear if I can't have ice cream or a milkshake after every meal.

The only other food that the baby should never be introduced to is corn (including corn products and corn syrup).

There are a few other foods that we should avoid for a period of time (6-12 months) and introduce slowly to watch for allergic reactions and/or intolerances. These include wheat, soy, bananas, nightshades (i.e. tomato, white potato, eggplant, peppers), citrus and peanuts/pistachios and also anything with artificial colors, additives or flavors. Fortunately, this is easy to do with a newborn since we have full control over what he eats as an infant. Hopefully, he'll have no problems with these foods but we'll take it slowly and watch carefully. I have also started taking a good multivitamin, an omega oil (EPA/DHA) supplement and probiotics which the baby will also be on as he transitions to food. He will also need additional B-12 vitamins and folic acid when he stops nursing.

We are considering having the whole family give up dairy products and corn. This will be a challenge but we feel it's the right thing to do. Thankfully there are a lot of non dairy options available nowadays and we'll steer the boys towards sherbets and sorbets when we go to the ice cream shop (this was the first thing that came to my mind!!). Still not sure how to handle Diego's addiction to the vanilla milk at Starbucks, but we'll figure it out as we go.

This is our first assignment and the first part of Joaquin's Intensive Treatment Program that we received in Philadelphia. We learned that what we eat, drink and breathe significantly affects brain function. We also learned that the fluid in the baby's ears may be resolved from dietary changes alone. This would be so exciting. It also gives me the motivation to say "adios" to my beloved milk.

Hearing Test

We had our third hearing test this week with the Audiologist. She did an ABR (auditory brainstem response test) that requires the baby be sleeping with different monitors taped on his forehead and behind his ears. We were in the office for over 3 1/2 hours. Joaquin did great and slept for most of it. I was so incredibly antsy by the end of the test since I had to have the baby laying on me the entire time and I couldn't move or make a noise so as not to wake him.

The bad news is.....he still has some mild to moderate hearing loss in both ears but mainly in the left ear. They determined that this is due to fluid in his middle ear. So although he can hear us, he hears us best when we are right near his face. He hears the rest of the sounds in the house as if he were underwater. The weird thing with fluid in the ears is that it can become thick with time so it is more like a paste and gets harder and harder to drain or evaporate normally from the ear.

The good news is....he has perfect hearing if they bypass the middle ear which means his hearing loss is treatable. So, we will discuss with the ENT doctor about how to eliminate the fluid in his ear at our next appointment in July. This is usually done with tubes but with little ears these are hard to place so they may recommend baby hearing aids until tubes can be placed so he doesn't miss out on any speech development. Also, we were told that Joaquin's ears are not the "typical" ears of a child with Down syndrome so the anatomy of his ears are "normal" and are to be treated this way by the ENT. Such good news.

I have every hope and confidence that his hearing issues will be resolved and I am so grateful for that. We'll keep you posted.

Hit by a Wave

Tonight I was hit by a wave of emotion.

I attended my first seminar sponsored by the Down Syndrome Information Alliance here in Sacramento. It was a presentation on Oral Motor Issues in Down Syndrome Children and it was presented by Lori Overland who is a speech pathologist in Connecticut.

I made a last minute decision to drive to North Sacramento to attend the conference even though Hector wasn't going to be able to make it. I didn't want to miss it so I packed all three boys in the van and we were on our way. I checked the boys into the childcare room that was provided free of charge, grabbed a few pieces of pizza that was also complimentary and sat down to wait for the lecture. A few people stopped to introduce themselves as I made my way to my seat.

And then it hit me. Tears began to well up in the corners of my eyes. I was overcome by a feeling of deep sadness. Waves of emotion were washing over me and I tried my hardest to keep it under control. A part of me felt safe surrounded by the mostly female audience and I thought I might be able to let it out knowing I would be supported. But then it passed, almost as quickly as it came and I felt my strength return. I could hear my dad's famous words in my head "shake it off"....words used to make the hurt go away, to will it away. I'm not sure if I was sad for myself or sad for Joaquin. Probably both. I think I was also hit by the reality of this new life of mine, one that includes seminars on how to help keep "one step ahead" of problems that may arise.

I think it was also a wave of reality. A part of me is still in denial that Joaquin may have hardships and challenges to overcome.

Thankfully the waves subsided and I was able to focus on the topic. The seminar was very good. Somewhere towards the middle of the talk, Joaquin was brought in to the room by one of the childcare providers. He was hungry and wanted to nurse, this was in turn met with many "oohs" and "aahs" as he was the only baby present. I had a few pertinent questions and the presenter made a point to come over to me after the talk to give recommendations on some exercises to do with Joaquin at this very young age to help with his oral motor control. Many of the mothers in attendance remarked that it was wonderful to see that I was breastfeeding Joaquin. A few mentioned that they were unable to do this with their own children and always regretted missing that experience. Many babies with DS have poor muscle tone which includes the muscles in their mouths. Overall there was a great feeling of warmth, understanding and support in the room.

Then it was time to gather up the rest of my gang. Diego and Mateo had a blast in the playroom, made a few new friends, and were happy to see me. They showered me with hugs and kisses and I took the time to soak it all up and didn't rush them as I often do. I felt strong again. We made our way back to the car, all of us buckled up and safe, and drove home.

Books, Books and More Books....

I can't get enough of them.

I just finished reading Jennifer Graf Groneberg's "Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome" and it was a beautiful book. I was so moved by her book that I emailed her and she responded back immediately. She even commented on our blog. So exciting! I feel like she is a friend just from reading her book and from her encouraging and congratulatory email.

I have also read and devoured "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" edited by Kathryn Lynard Soper. This was an amazing read with 63 different stories and perspectives and I found myself laughing and crying, sometimes at the same time.

In addition to these lovely books, Hector and I are reading Glen Doman's books from the Institutes in preparation for our seminar next week and we are getting really excited about it. "How Smart is Your Baby" was eye opening and I wish I had read the book before I had Diego and Mateo, so many amazing facts and insights. "What to Do About Your Brain Injured Child" is remarkable and shows how dedicated Glen Doman is to bettering the lives of all children. I can't wait to meet the author and his staff next week.

We just received the book "Expecting Adam" by Martha Beck in the mail from a dear family friend, Jane, who also sent us "Gifts" and "Road Map to Holland"- thank you Jane! Martha Beck is a contributing author for "O" Magazine and has appeared on Oprah a few times. I read this book about 6 years ago, just before I had Diego, and it really struck a cord with me. I can't wait to read the book again with "new" eyes.

All these books have been a lifeline for me the past month and are part of the reason I am so happy, hopeful and proud to be mother of a child with Down syndrome. I truly believe that these books would be just as special to all mothers and I would recommend them to anyone who is mesmerized by motherhood or for moms who have lost touch with the joys of parenting and are looking to reconnect with the special gift of raising children, Down syndrome or not.

Here is another video that I fell in love with and just have to share with all of you that kind of sums up everything I got from reading my books...get your tissues ready!

So You Think You Can Dance

Another post from Hector...

There have been a handful of people telling Jen and I about this boy with Down Syndrome that was on "So you think you can dance" a few weeks ago and I have been avoiding seeing it for one reason or another. Everyone knows I have a special place in my heart for people with DS, especially kids, they are so sweet and cute. But ever since Joaquin's diagnosis, it is a touchy subject for me. I know I am interested in knowing other people's experiences, but sometimes it is a hard reality that I am not fully comfortable with, not yet anyway. I had a lot of anxiety seeing Andres for the first time since we learned that Joaquin had DS . I love Andres dearly, but I knew I was going to see him with different eyes, like peaking into the future and I was afraid to do so. I am afraid still. I would love to be OK in that respect, but I can't help but still feel some anxiety and fear about the future.

Yesterday Jen was watching some videos on You Tube and she casually told me to watch the SYTYCD video. I did and I loved it. It was very sweet. I guess I was afraid someone was going to make fun of the boy or patronize him, but it was not like that at all.

I know that Joaquin is going to grow and do great things in his life, I can feel it in my heart. Someone told us that people with DS are born for a reason, that they have a special purpose in life. I believe it. We know that he can't wait to start talking because he has lots and lots of things to say, I can't wait...

The Institutes

A post from Hector....

When Andres was born, my sister Silvia and brother-in-law Carlos did what every parent in such a situation would do- they tried to learn as much as possible about what having a child with Down syndrome entails. Eighteen years ago, it was not as easy as today simply because the Internet was not around, so it all came down to whatever the doctors were telling them, or word of mouth since everyone knows someone who knows someone who has a child with DS. I remember at that time being so clueless as to what DS really meant. My only exposure to someone with DS was a boy named Pablito who hung out at the corner store near my house in Mexico City. All I remembered about him was that he was friendly but strange and I felt uneasy about it.

My sister found out about the Institutes when Andres was a few months old. Someone knew a girl who lived in Monterrey, Mexico, who was doing some kind of program from some Institutes in Philadelphia. They went to see her and were immediately hooked, they had found the answer to their prayers, a light of hope for Andres' future.

The Institutes for the Achievement of Human Potential is the official name and it was founded by Glenn Doman. The Institutes offer an intensive program for brain injured children and its objective is to achieve physical, intellectual, and social growth towards normality. There are several steps that must be taken to be considered for "The Intensive Treatment Program." First, both parents have to attend a 5 day intensive workshop called: "What to do about your brain injured child" which teaches parents about the field of child brain development. Jen and I will be attending this course in Philadelphia at the end of June. The second step is called "The Home Program Consultation", in which we would create a home program based on what we learned in the course. This home program is a requirement to be considered for the next step, "The Aspirant Program", that consists of a 2 day appointment at the Institutes where they do a thorough evaluation. Joaquin would then receive a specific program designed by the staff of The Institutes to achieve physical, intellectual, social and physiological wellness.

When Jen called to get information about the course in June, they offered us a chance to have the evaluation appointment immediately following the course since we live in California so we can minimize the flying back and forth to Philly. This was a huge surprise to me since I know that it took at least eight months for my sister to get an appointment for Andres. We are so lucky to be able to have Joaquin evaluated at such a young age and have them create a specific program for him based on his exact needs. They also made this exception because of our familiarity with the program, our enthusiasm and the fact that we had done some of the program very casually with Diego and Mateo after reading many of their books.

There have been a few people who have asked me why we think that Joaquin has a brain injury? Brain injury, according to the Institutes, is due to forces from outside the brain itself rather than to any inherent, preconceptual, built-in deficiency. A child with Down Syndrome has a malformation or abnormality of the brain on the basis of a genetic disorder. This brain-injury falls into the "Mentally Deficient" Brain-Injured Child, formerly called "mentally retarded". We now know that although the brain may appear structurally different, it will respond to stimulation and treatment. These children are candidates for a neurological treatment program, and that is why children with Down Syndrome do so well in this program.

We are very excited to have this opportunity to go to Philadelphia and learn more about how to help Joaquin, but especially to have him evaluated by the staff of the Institutes. I know the journey that Andres and his family took and that much of his success and how happy and fully functioning he is today is due to his involvement in this program. We are thrilled that we have all of his experience as a resource and a benchmark. Also, we are forever grateful to my brother David and my brother Sergio who are helping us financially to be able to do this since it is not covered by insurance.

We have started some of the exercises with Joaquin already. He is on his belly for most of the day (and he sleeps on his belly at night) and he was able to try out the "crawling track" while we were in Mexico (pictured above). We do a lot of different stimulation exercises and so far he is thriving and responding as he should. He is currently meeting all of his milestones for a baby at 4 months old which is remarkable. The only weakness we see so far is his neck control when held in a sitting position but we are starting to see some gains here as well. He LOVES to talk and babble and has even started to mimick some of the sounds that Jen makes. Any hearing loss he may have due to fluid in his ears has not hindered his speech development. It's all very exciting. We will definitely keep you all posted on all of his progress.

Band of Brothers

The very first thing Diego does when he gets up in the morning..every single morning... bright eyed and bouncing down the hall, is to come searching for Joaquin who is usually in bed with us by this time and he covers him with kisses and hugs. Mateo usually comes stumbling in after, the sleep still in his eyes as he is more of an "ease into the day" type of guy, and looks for the baby so he can greet him as well. "Mama's Little Baby" he calls him, even though I try to convince him he's still my baby too. "No" he always says, "I'm the brother!" These two big boys of mine can't get enough of the baby and literally have their hands all over him.

I wonder what it must be like to be Joaquin and to have all these faces each and every morning to look at, these adoring faces that can't get enough of his smile and his cooing and squeals. He is so lucky to have two older brothers.

We've started to try to explain to Diego that his brother has Down syndrome. Diego is 5 and going to Kindergarten in the Fall. This is a hard thing to explain to a child but so far Diego is unfazed by it. It's just another piece of information about his brother that doesn't change a thing about the way he feels about him. His response so far has been "Ok mom!", as if I just told him that his brother has brown hair and blue eyes. I love this age of innocence and acceptance. I know that this won't always be the case and that there may be prejudices that he and Mateo will be exposed to in everyday life. But I also know that both boys will grow up with a strong sense of compassion that is often hard to teach children but will come from having a brother with Down syndrome. I've spoken to friends who have siblings with special needs and they all say without a doubt that it has made them a better human being. A few days after Joaquin's diagnosis, Santiago, Hector's nephew who is 13, called to see how we were doing. He was very sweet and in a shy way tried to tell Hector that everything will be OK. He said that if given the choice of his brother Andres being "normal" or with DS, he would choose Andres with DS every time.

My hope is that this band of brothers stays strong. I know Hector and I have a big job ahead of us, a huge responsibility to teach them all how to get along, love each other and respect each others differences. I don't know what the future holds for Joaquin but then again I don't know what the future holds for Diego or Mateo. I have to remind myself when I get worried about the road ahead of us that just because we know that Joaquin has an extra chromosome doesn't mean we know the rest of his life story or that his life will be somewhat predictable because of it. My hope is that all three boys have every opportunity to reach their dreams, their aspirations and their full potential which will undoubtedly lead to their happiness.

In the far distant future, there may come a time when either Diego or Mateo will have to care for Joaquin, when and if we aren't able to, and my dream is that they will want to, not out of obligation but because they love him so dearly as they do now....every single morning.

Such a Blessing

I feel like it was a blessing I didn't know Joaquin had Down syndrome until just recently.

I opted not to do the AFP screen in my first trimester when it was offered. I just didn't feel inclined to do it. I remember thinking that I didn't want to have to deal with the stress involved with getting a positive result, or a false positive result...or a false negative result. So I just declined it. I did agree to genetic counseling and I did do an early 9 week ultrasound and another more in depth ultrasound at 20 weeks. The ultrasound showed us a healthy baby boy that was growing on time, had a strong beating heart and all his appropriate parts. No cause for alarm.

I declined the amniocentesis even though it was recommended by my doctor. I was 36 when I got pregnant and would be 37 when the baby was born which put me at a higher risk for having a baby with a birth defect. If I had gone through with the test, I would have been bombarded with information about all the negative aspects of Trisomy 21, the health scares, the worry, the stress, the sadness, and the option to terminate the pregnancy based on the diagnosis. I'm not sure I would have been told about the joy, the gift and the beauty of my imperfect child. 

It's a blessing I got to spend my pregnancy without any stress other than the normal stress that comes along with the third trimester, like how much more weight will I gain, what should we name him, is the nursery ready, do I have enough burp cloths? Because I didn't know about Joaquin's diagnosis, I was able to have an uneventful delivery (albeit a speedy one!!) with the normal joys, pains and anticipations that come with giving birth to a baby and I was able to have the normal, special bonding time with my newborn. Those special moments in the middle of the night just the two of us getting to know one another. I was able to marvel at his beauty and perfection without doctors or nurses coming in to tell me otherwise or to point out the physical markers or "imperfections" or to hear what may or may not be wrong with him. He wasn't whisked away to spend hours in the NICU for observation or tests, he was able to stay by my side, right where he was supposed to be.

It's a blessing that even though I had that first instinct about Joaquin, that no one "saw" anything so I was able to have a positive hospital experience and about 2 1/2 months of time to love and connect with my newborn son without any labels or worries or sadness. I can honestly say that despite the unusual circumstances around how we found out about Joaquin that I wouldn't have had it any other way.

It's a blessing that everything happened just the way it did...it was exactly as it should have been. We see Joaquin for who he is, not what he has. He is our third amazing, beautiful son. We are so blessed.

A Perfect Heart

We saw the cardiologist last Friday for our first of many specialist appointments to monitor Joaquin's health. Children with DS have a 50% chance of having heart issues sometimes leading to surgery. We were thrilled to find out that Joaquin has a perfect, normal heart. The doctor said there is no need to see her again. Check that one off the list! We're hoping it's the first of many healthy reports to come.

Welcome to Holland

I found this piece during my search for answers and information about Down syndrome shortly after Joaquin was diagnosed. It gave me immediate comfort and a new perspective. I hope you enjoy it.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Andres

Hector and I decided toward the latter part of the pregnancy that we would name our baby boy Joaquin. It's a name we both liked and one that we both could agree on. The middle name, on the other hand, was not so easy. I was a big fan of Tomas, my dad's favorite name and confirmation name. Hector was a big fan of Andres, the name of his favorite nephew who lives in Mexico City. I kept fighting for Tomas and thought it sounded great with Joaquin. But, Hector felt very strongly that he wanted to name this baby Joaquin Andres and he really wanted to do it to honor his nephew. So before the baby was born, after Hector stressed how important this was for him, we decided that Andres would be his middle name. Andres is the first nephew born on Hector's side of the family and the first of sixteen grandchildren for Hector's parents (Luz and Sergio). Andres also has Down syndrome.

What are the chances of that? It was one of the first things that ran through my head when we got the results of the chromosome test. Joaquin was named for Andres, before he was born, before we knew his diagnosis and now they shared the deepest of all bonds.

Hector has always had a special place in his heart for Andres and was with his sister when she found out that her first born son had Down Syndrome. The diagnosis was made shortly after he was born and it was a complete shock for the entire family. Hector formed an immediate bond with Andres and still to this day speaks the world of him. Andres is 18 years old now and is doing fantastic. He loves to read, swim and go to school. His favorite books are the Narnia series. He will graduate from high school next year and is preparing for his first job. He is the oldest of three boys (Juan Pablo and Santiago are his younger brothers) and his parents are an inspiration to us (Carlos and Silvia). Silvia was the very first person we called when we got the news of Joaquin's diagnosis and we spent a few hours on the phone with her. Thank God for Andres and Silvia. We had a shining example of how life can be with a child with Down syndrome and that gave us immediate peace and hope in a time of great need.

Andres got to meet Joaquin for the first time this past week in Mexico. His mother hadn't told him about his diagnosis because we had decided not to tell the extended family until they met Joaquin first. She was certain Andres would have had difficulty keeping this private so she waited to let us tell the rest of the family first. Apparently Andres saw Joaquin in his Aunt Ana Paula's arms in her stairway before anyone knew, he stopped, put his hand on Joaquin's head and said in Spanish "You're like me, you are just like me." This puzzled Ana Paula at the time. After we talked to the family and shared the news of Joaquin's diagnosis, she told us what Andres had said. Did he see himself in Joaquin? Was he referring to the fact that they share the same name? Was it something deeper than that? They definitely had a special connection the moment they met. We'll never fully understand what Andres meant by what he said but what we do know is that it was a powerful moment.

The Phone Call

For two long weeks, we wondered when we would hear the results and what those results would be. I spent endless hours on the computer in the middle of the night reading anything and everything that had to do with Down syndrome trying to prove or disprove that Joaquin had it. Hector felt relief at the doctor's instinct that he didn't think Joaquin had DS so he thought it was silly for me to spend so much time thinking and worrying about something that probably wouldn't be. I just had to know everything and to be prepared, it's just how I process things. Every day of those two weeks I would look at Joaquin and try to see "it" or not see "it." Mostly all I saw was my beautiful precious little boy who amazed me everyday with his smile and his adorable cooing and babbling.

Hector and I had many conversations about everything that we were going through. We talked through both scenarios. We mostly marveled at how one phone call was either going to dramatically change our lives or not.

On Friday afternoon, on Joaquin's three month birthday, we got the call. Hector was just home from work and playing with the big boys at the kitchen table and I had just put Joaquin down for a quick nap. I answered the phone. Our pediatrician called to say the results were in and plainly stated that Joaquin did not have Mosaic Down syndrome but in fact had Trisomy 21...true Down syndrome. My heart was pounding and I asked if I could please get my husband on the line. Together, on two different phones, we listened in on the call as he stated all the things that were going to have to be done, referrals that were going to be made and what this diagnosis meant for little Joaquin. The doctor mentioned that he was quite shocked and surprised by the results and that in his 15 years of medical practice, this was a first. He said it proved to him to always follow the mother's instinct. We hung up the phone with the doctor, held each other, put our hand on our sleeping baby and cried.

Memory Keeper's Daughter

Have you read this book? It's really good. I read it last summer when I was pregnant and loved it. I was so excited to hear that they had made a TV movie out of it. My mom told me to TIVO it and Hector and I watched it together one night after the baby was born. Unfortunately, we missed the first ten minutes of the movie because of a TIVO error so we missed the crucial birth scene. My mom was so eager for us to see the movie and asked me what we thought. I mentioned that we had missed the first few minutes but enjoyed the rest of the movie. She mentioned she still had it taped if I wanted to see the beginning of the movie.

The next day, I went over with all the boys to have lunch at my parent's house. I casually put the movie on and watched the first few minutes which included the crucial birth scene. The premise of the movie is about a mother who gives birth to twins...one who is normal and one who has Down syndrome. I won't give away the rest of the book....you MUST read it! Anyway, in the movie, when the baby girl who has DS is born, the film flashes on her face, her simian creases on her hand and her space between her toes. It was in that moment that I looked at my mom and said "That looks just like Joaquin." My mom looked at me and said "I know, I think you should have him tested." I will never forget that moment.

I called Joaquin's pediatrician a few hours later and left a message with the advice nurse with an urgent request to have Joaquin tested for Mosaic Down syndrome. I got a call back from the nurse saying that the doctor was confused and wanted to see him again in person before he would order the test.

I had thought in my mind that Joaquin must have Mosaic Down syndrome, if anything, only because he had only a few markers and was missing some of the major markers like a heart murmur and low muscle tone. I also thought this could be the only reason why no professional had spotted it until then. Mosaic DS is a rare form of DS that only some cells in the body have the three chromosomes and other cells are normal. I also thought in the back of my mind that maybe he didn't have it and that I was just making this all up.

We went in to see the doctor the next day and he looked at Joaquin and said he didn't see it- he looked for the low set ears which he doesn't have, he looked for the short pinky which he doesn't have, he didn't have the heart murmur, he didn't have the low muscle tone and he didn't have the typical facial features. The doctor said he would order the test only because I would probably worry and wonder if we didn't do the test so he was basically doing it for me and my peace of mind.

We immediately took the baby down to the lab to get his blood drawn. He didn't even flinch or cry as they took his precious blood. And then, the wait began.

For two LONG weeks...

A Mother's Instinct

Always trust a mother's instinct.

The very first words out of my mouth when I held my baby were "Does he have Down syndrome?" and I felt bad for saying that and for thinking that. There was something about his pretty slanted eyes that were swollen shut, his tiny nose and his little tongue sticking out but my comments were quickly dismissed and kind of nervously laughed off as a delirious mommy moment.

Joaquin was seen by a LOT of doctors and nurses during our stay at UC Davis Medical Center. It's a teaching hospital so you have countless residents coming in to see your baby and do their assessments. Joaquin failed his hearing test and I was told this was very common and not to worry. I was told he would get a referral for a second test in a few weeks and most likely everything would be fine. Well, he failed the second test too which indicated he had fluid in his ears. He was then scheduled for an ABR (auditory brainstem response test) around his three month birthday.

No one ever mentioned anything about Down syndrome. Ever. Hector had mentioned to the pediatrician in charge the morning of Joaquin's birth about my first impression of Joaquin. The doctor said the baby had a few mild markers but didn't think it indicated Down syndrome and said the only way to really know for sure was with a chromosome test and he didn't recommend one. From that day forward, both Hector and I thought there was nothing to worry about and just got on to the business of falling in love with our new baby.

Joaquin was seen by his regular pediatrician several times for routine visits and checks, maybe 3 or 4 times. Joaquin was doing great....eating, sleeping, pooping, peeing, etc. He was even army crawling in his bed at night. We'd put him on one end of the crib and by morning he would have inched himself over to the other side of the bed. We are firm believers in "belly sleeping." I think he was about 5 days old when I watched him flip himself over from belly to back. Proud mommy moment.

My mom who is a neonatal nurse pointed out that Joaquin had a simian crease on one hand, but otherwise his hands looked just like my other two boys. We also noticed that he had a wide space between his big toe and his little toes, what I later learned is called a "sandal gap." We just thought he had extra cute feet. He also had a bit of extra skin/fat on the back of his neck, just baby fat we were told. Joaquin also had a tiny little nose and tiny little ears. He really looked like a porcelain doll. We were told over and over again how beautiful he was and I really had to agree :)! All of these things we noticed occur on "normal" babies but something in the back of my mind was adding them all up. I think all of us (my mom, Hector and myself) kept wondering about these markers but again felt confident that surely the professionals would see things clearer than we would.

As time went on, all I could see was my beautiful baby boy who we loved so very much. He was such an angel baby. Rarely cried. Slept like a champ and slept a lot. Nursed without any issues. We were in sync with him and we all just adored him. The first three months were truly wonderful. Diego and Mateo were great big brothers. Diego loved to dote on the baby and although Mateo wanted very little to do with the baby at first, he was gradually warming up to him, calling him "mama's little baby."

We were all in love.

Joaquin's Birth Story

Here is the recap of Joaquin's birth story. I wrote it about a week after he was born...

So I had a doctor’s appointment on Thursday, January 31st with a new doctor (it was her first day on the job but obviously a seasoned doctor who said she had been in the business for over 20 years). She decided to check my cervix for progress and found that I was still only 1 cm and my cervix was long and hard. Same as I was 2 weeks before so she said it looked like I would go until my due date and if not, I was looking at a long drawn out labor…bummer! So that night I went to my baby shower and was glad to know that Joaquin would be coming in February after all- one of my hopes. Friday, the 1st of February, was a normally busy day with Diego and Mateo both having preschool. In the afternoon, before Hector came home, I decided to take them on a brisk walk around our block and we managed to do it two times and I felt good but felt like I was pushing it a bit by the end of the 2nd lap. I went to bed that evening wondering when I would go into labor since all of my labors start at night time. Well, sure enough at 2:45 am that morning of February 2nd, I felt a strong contraction that woke me up. I lied in bed for a half an hour trying to sleep and casually watched the clock. The contractions were coming pretty regularly but were very manageable at first. At 3:15 am I decided to get up and go to the bathroom. I had no bloody show so I thought this might just be a passing thing but they were still coming regularly. At about 3:30 am, I woke up Hector and told him I was having contractions but I wasn’t really sure what was going on. In between the pain, I would run around the house doing chores, picking up, doing some laundry, dishes, whatever, all in the dark so as not to disturb the boys. I got into the shower at this point because things were getting painful. My shower was brief- usually I love long showers while I labor, but I had to get out of there quick. I decided that I’d finish packing my bag and woke up Hector again and said I thought this was "it"…maybe. My labors with Diego and Mateo were at least 8 hours long or more. After a lot of denial, I wrote a quick email to friends to announce that I was in labor and then I called my parents at 4 am. They arrived about 15 minutes later and I was encouraging Hector to get ready to go. He showered, packed his bag, camera, unloaded his bike from his car, all of this pretty casually. Diego was peacefully asleep in his bed. Mateo was awake in our bed so I gave him some cuddles. My dad was in charge of the boys and finally we were off to the hospital after insisting that Hector get moving faster. My mom, Hector and I all piled into the car for a quick drive over to UC Davis Medical Center which is just around the corner from our house. I was in serious pain during the contractions at home but would just breathe through them, bent over at the waist- it helped a lot. I was on my feet most all of the time too. I felt like I had to go to the bathroom, this intense pressure down below. During this time, I also was very thirsty and drank a bunch of water but then ended up over the toilet, dry heaving and salivating because I felt like I had to throw up. I believe I was in transition on the way to the hospital. I was so uncomfortable and started asking for a shot of pain meds or an epidural on the drive over, anything to take away the intense pain I was feeling. I was very irritable even though the drive was a short one. I decided to have us park in the parking structure so I could walk to the nurses station which is quite a long walk by the way. I don’t know what I was thinking….I guess I was thinking I still had all the time in the world. We made the long walk, with me clutching Hector as each contraction came and with my mom coaching us to keep moving so we could make it to the delivery room. I would have to stop and bend over many, many times on the way to the nurses station. We finally got there and I was ready for anything to get rid of the pain. I told Hector and my mom I didn’t want to do this again, I never wanted to do this again and didn’t want to deliver this baby. So familiar. Same feeling I had with Diego and Mateo. I was scared again. At 4:45 am, we checked in and the nurses took their time even though I told them I was dying!!! They finally took me to triage to check my progress. I threw off my sweatshirt and stripped my pants, refused the band they wanted to put around my belly and just kept begging for pain meds. The nurse couldn’t find my cervix just a bag of water. Next nurse same thing, no cervix just a big bulging bag. They called the resident doctor in and when she went to check me, my bag broke and she discovered I was fully dilated, fully effaced and –1 station. I was going to have this baby now and no pain meds were going to be given. They rushed me down the hall on the gurney. Quickly but painfully transferred me to the delivery bed. Got my feet in position, I scooted down, they asked if I had to push and I screamed yes and pushed immediately and hard. Out came his head to everyone’s shock and surprise, especially Hector. They told me to wait a second and then push again and he was out and very purple. They rushed him over to his warming bed to give him oxygen and he pinked up very quickly and we heard him cry while the resident doctor helped me deliver the placenta and then had to stitch me several times for a tear which HURT!!! At this point, I was shaking uncontrollably and was very much in shock, pain, relief. They then proceeded to put an IV on me – just in case- which I objected to but had to let them do. They also wanted to inject me with pitocin (AFTER the birth) which I flat out refused which did not make the staff happy. I absolutely saw no reason for either of these procedures but was repeatedly told this was their normal procedure. I kept telling them I believed in my body’s ability to take care of itself. So they didn’t do the pitocin but did the IV. That was our agreement I guess.

Joaquin Andres Sanchez was born at 4:59 am (just 14 minutes after arriving at the hospital) and he weighed 7 pounds 5 ounces and 20 inches. He was so tiny and perfect looking as I saw him from far away in the warming bed. They let me hold him for less than a minute and kiss him before taking him to the nursery for observation and a bath. I lay alone in bed again waiting a few hours and recovering before I was able to see him again. He was perfect and beautiful (even though I thought he looked funny the first time I really got a good look at him). He was very puffy and his eyes were very swollen and bulging and he almost looked like a little Down’s syndrome baby because of his face and his tongue was constantly pushing out. In fact the first words out of my mouth were "Does he have Down syndrome?" Everyone laughed it off. The nurse said he had great tone. He nursed like champ from the beginning and I was instantly in love….again !!!!